Regarding Treadmill Article

I just wanted to comment on something that was discussed in the article. The author points out that walking is imperative to environmental exploration and the subsequent perceptual / cognitive development and although I agree walking provides a new level of independence, I disagree that our babies perceptual, cognitive, and self direction skills should be made to wait for their legs to get with the program! If we wait to provide environmental exploration opportunities until baby is even 12 months old, it will be too late to ensure this desire is part of baby's nature. (What if you were allowed to hang out in a swing, or carrier and everything was brought to you? Would you then appreciate being told to get up and go take care of things for yourself?)

Hopefully my book will be available soon, I go in depth of how to set up environments that allow independent exploration regardless of physical skill level. Here is a brief list of ideas...
1. get rid of a play pen / pack and play - get baby on floor during awake time. Find a room or area that is just his - get rid of furniture and obstacles and place all the things baby loves most around the perimeter. Whether he rolls, creeps or crawls, the message is clear - you want it? go get it! Plus, once baby has some mobility and self direction to explore, placing him in a confined space like a playpen or crib undermines it.
2. Do not use swings, carriers, etc to keep baby occupied - it reinforces the idea that they are to sit and wait for things to happen
3. TURN OFF THE TV - a baby can remain stationary in one place for hours and the TV continues working (among other negative effects.) Turn it off.
4. Family game night? get everyone on the floor - reading time for older children? Build "forts" with blankets and get on the floor- older kids will LOVE reading time - the forts will become a "hang out" and baby is included on many levels - obvious benefits of being read to, self direction to see what's going on, familial inclusion, fun, gross motor and fine motor, perceptual, cognitive, etc., etc. Use babies innate desire to be part of the action to your benefit. If everyone is in the fort reading out loud, baby will be wriggling like crazy to get in there!

These are just the tip of the iceberg. You can think of hundreds of ways to allow (not provide) baby to explore. By the time baby starts walking, he will just use that skill to take his explorations to a new level...and then Good Luck with that!

Treadmill Training

This is probably the only intervention I had learned about that I did not use with Lucas. I desperately wanted to, but finding a treadmill that would work was difficult. Even now a couple years later it seems that they are much easier to come by. The theory behind it is solid. All babies have a stepping reflex, which basically means if you place the child on their feet and lean them forward, one foot will automatically come out.

To hold a child on a treadmill with this reflex you are get continual eliciting of the reflex. Biomechanically, it doesn't mean much, but neurologically the benefits are numerous.
1. Increased communication between the 2 hemispheres of the brain
2. Feeding normalized sensation of what "recipricol movement" feels like into baby's brain.
3. Organization of the gross motor pathways which have connections to virtually every other area of development - the benefit of "cross patterns" are well recognized.
4. Increased proprioceptive input to lower extremities. (pressure sense, sometimes because of low tone a child will demonstrate postural instability, which means they are literally afraid to take a step because of being "unsure." This interferes with everything from walking to stair use and other higher level physical skills.)
5. I'm sure any mom or dad would find a way to turn this into a fantastic game filled with silly songs and rhyming stories set to the beat of the footsteps.....multisensory, multisensory, multisensory!
I'm sure the OT in me could continue with this list ad nauseum, but it is something I think you should know about. This isn't event a disputed benefit, the evidence is clear, treadmill training with babies with trisomy 21 helps them walk much earlier than those who didn't have the benefit. I think from a neurodevelopmental standpoint the benefit is FAR greater!
www.ns.umich.edu/htdocs/releases/story.php?id=6142

Just Came Across This Photo

I was just going through photos for a presentation I am giving and I found these.
Smart little bugger from the beginning! (Not to mention those fine motor skills!)

From the date, I can see Lucas was just over 5 months old. We started our reading program with the names of people in Lucas's life. I can not tell you how encouraged I was to see him understand and learn so quickly. Lucas has taught me many things, but the most important was never to underestimate him! (And yes I had him in a pod chair for reading time because he had to engage his back and core muscles, receive the proprioceptive input through the spine and figure out distal mobility on proximal stability, control his head and eye movements, all while concentrating on something else. No reason to just work on reading, better to use a multisensory approach and let Lucas experience several things at once! Didn't take him long to catch on, and we were sitting for reading without our handy pod chair!)

We included our reading words into the rest of our day and from the lovely dish towel on the ground I am assuming this was after dinner when I was cleaning the kitchen. The only thing missing is Noah and Ryan who would usually be putting new words up and playing peek-a-boo from behind the walls. Lucas would stretch up to see them, pushing on his little hands and arms, and if he happened to be watching them move back and forth, he would weight shift and roll over the boppy roll! I realized that not only did I not have to lower my expectations for Lucas, but I'd have to be pretty creative to keep him stimulated. He craved learning and trying new things. He still does today!

Connecting The Dots

I've not posted in a while, I have been in a whirlwind of new information and consultations. I have exponentially increased my understanding of the interconnectedness of many seemingly unconnected interventions. I mentioned in a previous post that I saw overlaps between symptoms of "the syndrome" and potential causes. I am more certain than ever that it is possible to have Trisomy 21 but little evidence of Down Syndrome.

I want to give you some new information I've obtained, but just as important as the information itself in the way I've obtained it - several unconnected sources, utilizing similar methods, achieving the same results.

I've mentioned in my blog about Kristen Morrison in Australia who has written Naturally Better, a phenomenally comprehensive book of natural supplements and techniques to intervene in our children's development before the symptoms of the syndrome become evident. She followed the programs from the Institutes of the achievement of human potential, intervened with natural supplements to maximize health and wellness (immunology being a part of that), and obtained treatments from an Osteopath (analogous to the chiropractor in the US.) I would encourage you to google her and look at the volume of photos of her son Gryffin. Besides his excellent health, cognition and physical development, he is visually very uninvolved, almost to the point that the T21 is undetectable.

I took Lucas to the chiropractor in the article I posted. He has a daughter with T21 who has had the benefit of his services since birth. She is a healthy and beautiful girl. Oh, and by the way, his wife is a naturalist, believing in natural interventions to maximize health and wellness.

We have provided supplements and vitamin therapy to Lucas from 5 months of age, used techniques based on neurodevelopmental principles, cleared his diet of sugars, preservatives, dyes and non organic food sources, and to a great degree gluten, increased his intake of essential things like glyconutrients, amino acids and enzymes, and guess what? Lucas is doing very well with minimal visual involvement as well.

That's three for three. I point this out only because I believe there is a whole movement going on, but no one is talking about it. If you wonder why, try convincing one of your child's doctors or specialists that you expect wellness, intelligence and uninvolved features (among many other things) from your child. Aside from the specialists, try convincing other parents who have only employed traditional methods and embraced the "special needs" approaches filled with compensatory techniques and albeit unknowingly, lowered expectations for their children.


I have just finished reading a written opinion that alternative approaches to neurologic problems are "irresponsible" and that no recognized medical research has ever proven any of it does anything. Admittedly knowing little of the person who wrote such a thing, I have to wonder if this person has ever thought about what she was saying. Natural supplements, gentle adjusting of the spine, vitamin therapy, Tomatis therapy, etc., are "irresponsible" and yet the formally recognized medical opinion for our children's health is to expect illness and limitation secondary to the extra chromosome, use of antibiotics, synthetic thyroid stimulating hormones and other drugs to manage the symptoms of the syndrome is responsible? Desirable? Effective? We as parents with aspirations of achievement for our children should not seek any and all methods that do no harm in effort to maximize health and development? I wonder if this lady has ever had a massage to reduce stress or taken a zinc lozenge to ease a cold. Rediculous is the criticism that stands in the way of true progress, forward thinking and success.


In working with our developmental pediatrician / naturopath (she is a rare breed indeed!) I have been learning much about the interconnectedness of things like omega 3 and speech, vitamin D and immunity, red blood cell size and the body's ability to use certain vitamins and nutrients. I have learned the most important thing I can do right now is to get a series of blood work done on Lucas so we can put the puzzle together. Naturally supplement what's out of balance so health is maximized. Why does that idea seem so radical?


As an OT I have always had respect for the fact our nervous systems control every part of our bodies and the pure structure of our anatomy can lead to nerve entrapment, tissue damage resulting in muscle imbalances, and even metabolic disturbances. Look no further than a patient with a spinal cord injury who profusely sweats, loses their hair, or has a dip in blood pressure from a change of gravitational force. The nervous system does not operate on a 1:1 cause effect basis, it is a complex series of events that control every part of us from thinking, to moving, to immunity. In researching the theory behind chiropractic care for children with neurologic disorders, I realize it is just that - a theory. But it is a darn good one. If I can maximize the efficiency of the metabolic system through a series of gentle adjustments to the spine to ensure everything is in balance, I would be hard pressed to see the downside.


In taking a natural approach, I find the overlaps are incredible. The immune system is being positively acted on by diet, supplementation, vitamin therapy and chiropractic care. Each blood test reveals one more clue, one more secret to how the extra chromosome has manifested itself in Lucas's metabolism and giving us the opportunity to supply what is deficient naturally. In turn, Lucas's cognition is enhanced by his overall wellness, antioxidant therapy, vitamin therapy, early literacy, therapeutic play, and most of all high expectations. His overall health and cognition allow him to further participate in school, social activities, and sports which in turn feed back into the loop of wellness. I could go on down the list of every part of the "syndrome" or "phenotype" and list at least 3 or 4 natural interventions which in turn impact 3 or 4 additional areas. 


There needs to be a plan, one that we are willing to talk about, one that we are willing to be criticized for by those we deeply respect. There are many new and expectant parents out there with a feeling in their gut that there is a better way. There are many who are finding their way despite the nay saying and criticism. I think of the list of things we have obtained for Lucas. All of them natural, none of them harmful. I think back to the woman who wants proof. Proof is impossible. If I apply all I know and have success it will be discounted as simply the way Lucas's genes expressed themselves. The only way I can prove my methods are having an impact is to stop them. I will never stop. I will continue to find non obtrusive ways to help my child achieve all he can. There needs to be a paradigm shift from managing symptoms of the syndrome to preventing the development of symptoms in the first place. If we understand the "why" then we can find a way. 


I keep thinking about the cognitive tests Lucas underwent this past summer. Some comments were "areas of major strength are memory and the ability to generalize information." Anyone familiar with the learning problems of children with T21 know that memory and generalization are two huge obstacles to learning. I also think about the doctor we flew to see in Baltimore who conducted research on the vitamin / antioxidant / enzyme therapy we embarked on telling me to start immediately. New thinking is that the earlier in life a child starts the therapy, the more cognitive function is enhanced. Proof? I don't need proof, I don't need statistical significance, I need to unravel the mystery and find new ways to help Lucas learn and be well..new ways that are effective and do no harm.

Article from The New York Times on Prenatal Testing

http://parenting.blogs.nytimes.com/2010/09/14/deciding-not-to-screen-for-down-syndrome/

Oral Motor Article

I have gotten many e-mails stating the link to the oral motor article could not be opened. I found it in PDF format. Try copying and pasting this whole link to your search.

www.talktools.net/.../The%20Oral- Motor%20Myths%20of%20Down%20syndrome.pdf

Expect. Don't Accept.

The following was an article I found through Kirsten Morrison at Naturally Better Kids. There are a lot of us out there, we need to keep expecting and educating!

Expect. Don't Accept. 

2009 Keynote Address by Paul Daugherty

(Paul Daugherty delivered this keynote address at the Remarkable Families Symposium on Friday, April 3, 2009 in the Cintas Center.)

Thank you very very much for inviting me to speak to such a "remarkable" group of people. Life has given you a gift. If you don't realize that already, you will in time. I promise you.

My daughter Jillian is 19. She is a senior in high school, who will attend Northern Kentucky University in the fall. She has performed in the school play, she has managed the school volleyball team, she was on the junior varsity dance team that entertains at halftimes of basketball games. Believe it or not, she holds the school record in her weight class for the bench press, the dead lift and the squat. (Dad already had one son. Maybe he wanted another.) Last summer, she worked 12 hours a week in a daycare center, making almost $8 an hour. The kids loved her, and cried when she left to go back to high school.

And she has Down Syndrome. In some respects, that matters a great deal. In others, it matters not at all. It's about perception, mostly. It's about insisting on getting what you pay for, and not leaving the ticket counter or the insurance office -- or the high school conference room -- until you get it.

Ultimately, it's about giving your child the chance every other child gets.

People look, but they don't see. People, and I'm talking qualified professionals, people trained in special education, too often don't look at Jillian and see possibility. They look at a child with Down Syndrome. They don't see who she can be. They conjure a stereotype. It's easier that way.

Jillian once had a special ed teacher who sat in an IEP meeting with us and said, quote, she can't learn. Jillian has had teachers, too many teachers, who could not be bothered to explore her possibility. It has been amazing, watching these teachers, who at some young age must have though teaching was an opportunity to change a kid's life. Presented with Exhibit A in my daughter, most of them have attempted the bare minimum. They have missed their calling. They're enriched only by a paycheck. My wife Kerry and I have spent 19 years trying to change their perceptions. We will never stop. We have been guided by one thought:

Expect. Don't accept.

We have not allowed our daughter's aspirations to be tethered to the the way people look at her, without seeing her. We let Jillian set her own bar. Wanna dance on a team? If you're good enough. Wanna get a summer job working with kids? If they'll hire you. Wanna set the school weightlifting record. Sure, great, absolutely. No steroids.

We never say never. Never is not a word. It's a self-defeating state of mind.

We have to change the way people think before we can change the way they act. Altering perceptions is like breaking a stone with drops of water. It can be done, if you're willing to take the time.

It hasn't been easy. Who said raising any child was easy? Kerry and I have blazed more trails than Daniel Boone. We have sat in countless meetings with teachers and administrators. We have spent countless nights and hours agonizing over homework assignments that were not modified for Jillian or overly dumbed-down for Jillian, you know, that kid with Down Syndrome. We have exhausted a lifetime's worth of patience in 12 short years.

We have spent an equal amount of time educating the educators. Don't just look at our daughter. See her.

Don't put up Stop signs for my kid. Let her direct her own traffic. If you don't, we will be there, hauling you into a meeting, demanding for Jillian what you so freely offer every other kid: An honest chance. Let her tell you the height of the bar. Expect, don't accept.

Great strides are made when we remove the word No from our vocabularies, when we expand our thinking to account for the impossible. We went to the moon, didn't we? We eradicated polio, we can take pictures with a telephone. We elected an African-American president of the United States.

All any of it required, at base, was a disbelief in limitations. She can't learn? No, you're not willing to let her try. As parents, we cannot let that go unchallenged, not ever. We owe our kids that much. Expect, don't accept.

Do not give in to those who would ignore their better natures, because it's easier to retain a stereotype than change it. Change requires work, but it's the only way we improve as human beings. When people resist change, protest. Scream real loud.  Don't let them tell you what your kid can do. Expect, don't accept.

Let me tell you some about the life of Jillian Daugherty, young and improving.

On the harshest emotional night, Jillian Phillips Daugherty couldn't wait to get out. The occasion of her birth was melancholy to everyone but her. Jillian loved being born. Her older brother Kelly had taken his sweet time. He slept late in the womb. Fourteen hours of labor before he emerged, wary and wailing. Jillian couldn't wait to see everybody. It took less than an hour. She came out like a watermelon seed between two fingers. Hel-lo world!

I think about this all the time now, whenever Jillian wakes up early on days she can sleep late, or hears me coming into the house and screams like it's 1955 and I'm Elvis. Jillian can't wait for the next moment, the next hour, the next chance to be Jillian. Jillian wasn't born 19 years ago. She was unleashed.

When she was a couple months old, she developed mucous in her chest and lungs so thick, she could barely breathe. Jillian was in the hospital 11 days and nearly to the point she needed a respirator. Then one more in a silent army of doctors poked her in the heel with yet another needle.

Ticked her off.

Jillian screamed so profoundly, it knocked the snot from her chest.

She's never stopped expressing herself. There was a time, many, many years ago, when I yelled at her for some transgression or another. Unfortunately, having Down Syndrome doesn't mean you won't spill apple juice or try to ride the dog like she's National Velvet.

Anyway, I'm airing Jillian out. During a pause in the action, she looks up and says, "Do you want a piece of me?"

My daughter is a piece of work.

Something that we as parents have learned is, every small achievement is worth celebrating: Tying shoes, answering the phone, writing thank-you notes, making the bed, fixing breakfast. After each of these little triumphs, I always ask myself: Who got the better part of this deal? Jillian? Or me?

As parents, we've spent lots of time hearing what our kids can't do, will never do. We heard it from the first day. She'll never be able to... complete the sentence. We never bought into that. You get what you expect. Not what you accept. It is the difference between settling and battling. The difference between daydreams and real ones. You get what you expect. Not what you accept.

Jillian would never ride a two-wheeler. That's what we heard. She wouldn't have the coordination. Even if she did, she wouldn't have the stamina. These Down kids, you know, they're fragile little people.

Many years ago, we got Jillian a bike with training wheels. She used it for a summer. Then the training wheels came off. For awhile, Jillian's wheels came off, too. It was like a guy in Nebraska, finding his sea legs.

Jillian, being Jillian, banged into this two-wheeled business with both feet. And both knees, both elbows and a forehead or two. We spent three months learning to ride the two-wheeler. It was like cracking a code or something. Every day, I'd drag poor Jillian out to the driveway we share with three other houses. I'd help her up, get her started and hold the back of her seat as she began pedaling.

For a month at least, Jillian ran that bike the way Mike Brown runs the Bengals. She'd sway and swerve and after about a 2-yard gain, crash.

We made progress, though, mainly because Jillian has a will like an I-beam. The kid never quit. The amazing thing was, she wasn't doing it so much for her as for me. She knew how much I wanted her to ride that two-wheeler. She saw how happy it made me when she managed a few more feet than the day before. My joy became hers.

Then one day, I pushed and ran alongside and... let go. Jillian kept going, to the end of the driveway, dread mixed with elation. "Dad, I'm doing it. Oh my gosh." She was off and riding. I was in the clouds. The last time Jillian and I went riding, we did 20 miles on the Loveland Bike Trail.

Don't accept. Expect.

What else did we hear? These kids won't read. Jillian reads at about a 6th-grade level. She's in a book club. These kids aren't good socially. There are times I wish that were the case. In her elementary school, Jillian was known as The Mayor. In intermediate school, she was appointed an ambassador, a 6th-grader charged with showing the rookie 5th-graders around the building.

Education should be the business of instilling hope. Too often, it isn't. I don't like being a pioneer. I'm not curing polio. I'm just expecting teachers to do their jobs. I'm not accepting any less. There are teachers at Jillian's school now who frown at the mention of my name. And my wife's. We're a pain in the rear. Other parents have to change diapers. We have to change minds.

But what a payoff.

Here is what Jillian does. Here is the service she performs, by being her: She opens my eyes to the wonder of the ordinary. I've enjoyed the little wins with Jillian I took for granted with her brother: Using a fork, spelling, times tables, discerning the incredibly vital difference between homogeneous and heterogeneous mixtures. Actually, for several years, Jillian has had homework I can't do, making me wonder who's got the syndrome thing here.

I would never have seen any of this without Jillian's vision. I look forward to the next generation of milestones: Jillian home alone overnight, Jillian in her own apartment. Jillian, God help us, learning to drive.

As these kids grow, so do we. We spend less time asking why and more asking why not. Their limitations are obvious. What's less apparent is how many of those limitations disappear when we expect better and more, from them and ourselves. And when we accept nothing less. Their potential is limited only by our preconceptions.

I remember in the weeks and months after Jillian was born, listening to a Bruce Springsteen song called Walk Like A Man. One of the lines was, "I was young and I didn't know what to do, when I saw your best steps stolen away from you; I'll do what I can. I'll walk like a man."

I was wrong about that. From the instant she appeared, Jillian has never lost a step. She doesn't get cheated, to use a baseball term. Jillian gets her hacks. We quickly got over the immediate emotions surrounding her birth. Jillian, happily, never got over being Jillian.

I see Jillian with different eyes. I love her with a different part of my heart. I can't help that. But I don't expect anything less from her. And I accept nothing less than all she has.

Life doesn't let us in on many secrets. One of them is, happiness comes to those who do the best with what they have. The more we struggle in our limited, human way, to make sense of things, the more we see that some things don't come with sense included. The best we can do is the best we can do.

It's called Down Syndrome because a guy named Down identified it. It's not down at all, not for the kids and the teachers and classmates who choose to embrace them. Certainly not for those of us who are privileged to know them and love them.

As parents of children with disabilities, we face unusual challenges. But also, unique opportunity. As we blaze the trails, bend the minds and tweak the perceptions, we reap the rewards of knowing we've made the world a better place. We're only as good as the way we treat each other.

It's hard. It's very hard. But we wouldn't be here today if we didn't believe, with everything we've got, that it's worth it. Expect, don't accept. Carry on and thank you again for the privilege of speaking to you today.

First Thing's First - When Everything is New

My hope is that new and expectant parents will find this blog when they need it most. I can't imagine what would have happened to our journey, how irrevocably altered it would have been, had I not been lucky enough to stumble upon some incredible information in the very earliest of days. Indeed, although traditional practitioners formally put very little credence into our methods, they are off-the-record impressed with our journey and in fact believe that starting as an infant gave us an advantage rather than waiting to see what would unfold. It is my opinion that if you wait for a problem in our kids they will come, and then it may be too late to intervene. 

The following are absolute must reads, as quickly as you can get them and read them - they will completely change the perspective with which you think about Down Syndrome and start you on an amazing journey of wellness and achievement.

1. BEFORE YOUR BABY'S NEXT FEEDING, READ THIS ARTICLE!

A speech pathologists outlines a theory as to why the classic "open mouth, tongue out of mouth, jaw protrusion" image we all see when we think of adults with DS is preventable with a simple positioning change when we nurse or feed our babies. As an OT it made clinical sense to me and I implemented it throughout Lucas's first year. You can scroll down to see pictures of him today, none of the aforementioned traits are evident and indeed all of his oral motor structures are formed perfectly, even his teeth alignment. He has never had an ear infection or difficulty eating. Maybe just genetically blessed, but I think that a lot of damage could have been done had I nursed him the conventional way. You can e-mail me at geralynOT@Yahoo.com if you'd like an explanation of how I did it, but I think you'll get the idea!

http://www.kidscanlearn.net/down.htm

2. There is a place in Philadelphia called The Institute for the Achievement of Human Potential. They treat ALL developmental delay as a brain injury, including DS - which is a good thing because the commonly seen limitations in adults with DS should not be viewed as a given, rather a map of where to intervene. As an OT I realize that you can work on eating, fine and gross motor development, cognition etc. after problems have arisen, but unless you actually change the way the brain is working, you will never see true change. They have a plethora of literature that you will find yourself compelled to read, but you absolutely should begin with "What to do About Your Brain Injured Child." While you're on the website look around. You will not find any mention of limitation or lowered expectation. Their methods (Developed by a Physical Therapist and a Neurologist originally) find ways to actually help the brain create connections. - This will lead you to the discussion of early literacy (The Institute's book "Teach Your Baby to Read). We started the reading program when Lucas was 6 months old. Today he reads tons of sight words and we are putting them together into little books for him. Not only does stimulating the pathways for reading help with literacy but with memory and a whole set of other things classically seen as part of the "syndrome."

 http://www.iahp.org

3. This isn't anything for you to look up, just one simple heartwarming fact. There are currently over 200 families on waiting lists to adopt a baby with Down Syndrome. Many of them are families who already have a child with DS. I have read some waiting list estimates of up to 5 years! I have considered it myself.

You will not find many specialists who share this view, in fact I read one article written by parents talking about how much richer their lives are since the birth of their child, how things like marriages and other sibling relationships have actually been strengthened. At the end of the article was a specialist warning that parents tend to paint "too rosy a picture." Well, who should I have believed? The doctors, or the parents who are spending their time and effort to tell the world that their perception of trisomy 21 isn't correct? I once read an op ed entitled "Down Syndrome is no big deal" written by a dad, I laughed out loud thinking about the doctors and specialists who probably wanted to have the man committed!

4. Read my blog about vitamin therapy and read this book ---- TODAY!

Vitamin Therapy and Down Syndrome; Unlocking the secrets of improved health and behaviour.

Finally, let me be one of the first to wish you a heartfelt congratulations on the birth of your new baby. I know how difficult this time is for you, but believe me, it wont be long before that beautiful new life is going to start amazing you and fueling a fire for you to find more and more for him!